22 Lesser Known Facts About Fibro

If you’re like me, you’re always trying to stay apprised of new information surrounding your illness(es). Sometimes, it seems like I never see anything new and oftentimes, it seems the data I read is just somehow recycled; one site to another. So I spent some time (okay, a lot of time) gathering facts that, maybe, are not quite as well known about Fibromyalgia. I have to say, there is not a plethora of studies out there. While I can certainly appreciate why millions upon millions of dollars are spent on cancer research, how many lives could be vastly improved with better understanding and more (or even just one!!) viable treatment option for Fibro?

So, without further adieu, did you know these 22 facts about
Fibro???

Fibromyalgia is a disease of the Central Nervous System, characterized in part, by abnormalities in pain processing.1 (it’s NOT Autoimmune, Rheumatological OR Psychosomatic)

In a 2018 Harvard study, PET Scans of patients with Fibromyalgia showed widespread inflammation in their brains; more specifically, in the immune cells of the brain (once and for all debunking the myth that Fibro is a Psychological disease). 2

The average time of morning stiffness for a Fibro patient is 75 minutes.

Descriptions of Fibro in medical literature date as far back as the early 17th century. There are even descriptions in the Bible’s book of Job.

On average, it takes a typical Fibro patient 5 years and 15 Providers to reach a diagnosis.

Over 50% of patients are originally misdiagnosed.

93% of patients had worked *throughout their entire life* (prior to becoming ill).

44% of patients are fairly or totally dependent on a family member for household chores.

42% of patients are not in the workforce.

84% of patients report suffering from more than one condition or disease, with 28% of FM patients also diagnosed with Chronic Fatigue Syndrome.

45% of patients feel that their family does not understand the disease.

67% of patients report many sexual difficulties as a result of the disease.

3% to 6% of the world’s population, or more than 200 to 400 million people worldwide, have this chronic condition. It crosses all nationalities and races and both sexes.

There is an average of one workday missed each week, for those who are employed, with an average of 10% earnings loss.

In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain.

The suicide risk among fibromyalgia patients is *ten times* that of the general population. However, *none* of the Fibromyalgia patients who did commit suicide had a medical history of depression or other psychiatric illness at the time of diagnosis.

Many people who went to Mayo Clinic’s Fibromyalgia Clinic are perfectionists who have very high expectations for themselves.

74% of responders reported spending between $100 and $500 each month on over-the-counter products.

61% spent between $100 and $500 each month on prescription medications.

In one study of 2,569 respondents, the medications perceived to be the most effective (out of 253 listed) were: Hydrocodone, Alprazolam (Xanax), Oxycodone, Zolpidem (Ambien), Cyclobenzaprine (Flexeril) and Clonazepam (Klonopin). (So much for Opiods not being effective!)

34% of fibromyalgia patients spend between $100- $1,000 per month *above* their insurance to see a healthcare professional.

I hope that I have provided you with some statistics that maybe you did not know before now. The more we talk, the more we call attention to it, the more and harder we fight, the better we may be heard.

Love, Stace

ps While I am not including the bibliography in my post, I do feel it important to be transparent and to be able to back what I write with factual data. Please reach out to me if you would like to receive the bibliography.

Two totally different “people”-I apologize for confusing you. Pain Pals is a personal Blog; as one of her posts, she rounds up and calls attention to other Bloggers who’s material she liked that week-which is great. The Mighty is a large organization who allows you to submit your “stories” and possibly have them chosen for publication.

HA!! Hermits Unite! We’re the fiercest competitors of the “housebound team”! 😉😂
I can’t wait to read your post that gets published!! Good luck-it will be great!
If you need me, you can always find me @ litlstace@gmail.com

Send me a pic with your “thinking cap” on. I bet it’s awesome!
Ok-I guess I didn’t literally mean “story”. For instance, The Mighty is publishing three of my blog posts: Why Fibro Affects Your Speech, Why Give Up Has Been The Best Advice Any Doctor Gave Me and 22 Things to Remember Next Time You Flare. Those are the examples of what they’re publishing. I got rejected on two.
They have monthly writing prompts to help, found here: https://themighty.com/submit-a-story/

You are way to organized for me and no woorry on giving away the secrets, I have dementia so last nights dinner doesn’t always come to mind. I did take a self of my hat, maybe the third in history. I’m too fat to allow anyone to see me, you get the yes. I’ll send to email! Now you have to share, I can’t put myself on the line without something in return. Maybe your eating something good for lunch? I had yogurt nothing worth a photo. I’m sure you can put your creative mind to work. 🙂

Can you tell me more about #8, I have a healthy teenage daughter who I’d like to give this information to. She doesn’t understand that I am not lazy but I need help. I’d appreciate it if you could tell me the source. Thank you.

LOL. It’s been so long I missed you. Are you specifically speaking of The Mighty badge I have displayed? The Mighty “badge” can only be displayed (based on the Mighty’s rules) when you have had a story published on their site in the last three months. Once you’ve been published, then you can display their badge. Does that help?

I like your blog, it was filled with information and not fake cure alls, and I’m sorry to say I have FM i know the struggles I would just like to find a site/blog with positive energy and sharing of what has worked for someone.

Hi Andi, thanks so much, I greatly appreciate that feedback and you taking the time to comment. I hope you will sign up to follow my blog! I’m sorry you have FM, I wouldn’t wish it on anyone. I completely agree with you, that’s part of why I finally decided to start writing. I got so tired of the same unhelpful, recycled material. I wanted to try to use the wealth of experience I have battling this, to help others, without (as you said) the nonsensical fix alls. We can’t cure this, but there are things I’ve learned that can help and my readers are the best, also chiming in with their experience!! I wholeheartedly believe that positivity and gratitude are two of the most effective tools we have in our arsenal. It isn’t always easy, but focusing on the moment and all we have, instead of all we’ve lost, is something I really believe helps get us through. Please let me know if/when there’s anything you would like to see a post on-I’m always open to suggestions. It’s really great to “meet” you.
~Stace

I was one of the lucky ones who was diagnosed quite quickly due to onset being part of a worker’s comp claim, the first one in my life at age 52. I think it was about 6 months. Pain started with a frozen shoulder, which was not responding to treatment. The physical therapist “unfroze” my shoulder which meant forcing it through range of motion. It was very painful even though I had premeditated with pain medication. From there, though exercises did improve my shoulder, the pain proceeded over to my neck to the other shoulder and then down my spine throughout my body. I was sent to a out of town spine specialist who diagnosed me with myofascial syndrome. He said, “I can’t treat you, but you are a smart lady, look it up”. (I was a medical transcriptionist for 32 years).

My comp doctor sent me to a doctor who “treated” myofascial syndrome and she is the one who diagnosed me on my first visit. I climbed onto the exam table dressed in my yoga pants and t-shirt expecting “treatment”. What she did was talk to me, asking me questions about my pain while she “treated” me. After about 5 minutes of various maneuvers she stopped the maneuvers and said “You have fibromyalgia”. I responded, “I do not!!” You see I had typed that word and it was always with a psychological bent to it. Dr. Kate sort of laughed and explained that research has come a long ways. She signed me up for a chronic pain group and made sure I had a list of supplements and vitamins to take.

My own internal medicine doctor, who has been my treating physician for about 20 years or more (she is a year younger than I am) said “I don’t believe in fibromyalgia, but I believe you have pain so I will give you pain medication and muscle relaxants”. I had a history of migraines at that point for over 20 years experiencing a mini-stroke at age 26, so I had a history of responsible opioid use.

Pain group was good……at first, but when starting the second session I realized I did not want to be identified by my chronic pain, I did not want to focus on it as much as the therapist wanted us to. I just wanted to be me. So I quit the pain group and asked my internist for a referral to the group rheumatologist.

I will always be so grateful to her, Cynthia Rubio, M.D. (now retired). She took one look at me and knew something was wrong. Her guess was actually lupus because my hair is quite thin and I have rosacea, which she thought was a lupus rash. Ten vials of blood were taken to test for everything. I had some minor changes in some tests, but no lupus. She diagnosed me with Fibromyalgia and Connective Tissue Disorder, NOS. She put me on a regimen that included gabapentin and amitriptyline which changed my life.

I was off work for 2 years, but had a job plopped in my lap as an assistant to the Executive Director of an assisted living facility, not long after starting my new regimen. I was not sure I could do it, but 2 years later I was the Executive Director and did that job for another 2 years. It was an extremely rewarding/stressful job. I retired 7/8/16 due to that stress and my body just telling me I couldn’t do it anymore. You see if someone called off and I could not get anyone to fill the slot, I did it. You can imagine that trying to be a caregiver was too much for me. I was starting to withdraw and get depressed. When my son-in-law who was my finance guy, (I had 52 employees and about 90 residents to be responsible for) I just knew I could not continue. He took a lot of stress off me. (He is legally blind, medically retired from the Marines Corp and decided to go to college).

I had so many comorbidities before being diagnosed including dry eye syndrome, costochondritis, vulvodynia and restless leg syndrome. Before Dr. Rubio retired she sent me for another neurological consult and the doctor reviewing my sleep study (yet another woman), said my sleep apnea was very mild, but my restless leg syndrome was moderate and thought I needed Valium (diazepam). Best sleep ever! She said I could be treated with it until I was totally through menopause, which was another year and a half or so. Then I had to quit. I wish I still had it occasionally.

Before being diagnosed, I had worked my entire adult life with my longest of 3 maternity leaves being 5 months. I was a cheerleader mom for 10 years straight (all 3 daughters participated), and my youngest was the athlete and stopped cheerleading when she went to high school and concentrated on other sports including soccer which she was good. So we traveled a lot and I was very busy. I was also always one of the moms that did everything when it came to school, you know the core group?

We were not financially ready for me to not work, but I just couldn’t do it anymore, and we are fine (except for medical insurance here in California went from $1100 a month to $1800 a month in 1/2018 and we went to Liberty Medical and dropped the Anthem Blue Cross. Yes I’m lucky that we bought into a business many years ago that my dr boss invited us into and my husband runs it. We make enough with husband’s salary and dividends.

In the past 10 years at some point my older sister starting having pain and she has been diagnosed with several rheumatoid diagnoses, but the meds her rheumatologist put her on made her worse. I think she might be one of those who take the 15 providers to be properly diagnosed. She is scheduled at John Hopkins in October and I am wondering if she will finally get a diagnosis of fibromyalgia also. She describes her pain as “burning” which is how I describe mine. Pain medication does not always help her and it almost always helps me unless I’m stupid enough to go back out to the garden, continuing to pull weeds. If I stop, take a pain pill and rest on a heating pad in my recliner, I almost always get rid of the pain. It does not always work for her. She is also extremely exhausted sometimes, not every single day, it sort of cycles. I feel terrible for her. She is in Washington and I am in California so we talk on the phone a lot!

I find if I do a little housework every day I can maintain with help from DH. I try to dinner prep in the morning because by the end of the day I am in more pain. I do sew and it doesn’t bother me too much unless I do it too many hours. I made strawberry jam last week and I was in terrible pain by the time I finished from standing so long. Because I was very active and worked a lot before the onset of fibro, I tend to overdo/recover/overdo/recover. I try to do less but it’s really hard!!

I am grateful for my husband and family and doctor who prescribes 3 pain pills (Tylenol #4) a day. I was on Vicodin for about 6 months but it stopped working so I went back to the codeine, which is what I used for all those years of regular migraines. I am grateful for my memory foam adjustable bed. My morning pain was 90% better the very first night I slept on it. I have had it for 6 years and I have a hard time traveling! Before having the bed I had to get up as soon as I woke up because I was in so much pain!!

Wow!!! Thanks for all of your wonderful and informative comments!!
I’m so glad you had a wonderful Doctor that was empathetic and treated you well (medically speaking). The right Doctor can make all the difference! I’m sorry about your Sister….I hope she gets some answers at John Hopkins. Fibro does run in families. I, too, am totally guilty of the overdo/recover pattern. I can’t help myself!!! My good days feel SO good and I have so many down days. I’d rather just “run with it” when I feel good. Although I no longer push myself when I don’t. That’s incredible that medicine helped you enough so that you could work. That’s amazing. I’m glad you took care of yourself and retired though-it’s tough to give up our careers! Thank you so much for reading and commenting-I just found your Blog and followed it. Your quilts are very beautiful!! I hope you enjoy your long weekend! ❤️Stace

Oh Allysgrandma! You have no idea what your comment means to me. I am a behavioral clinician and I have worked in human services for 32 years. I was diagnosed with Fibro in December 2016 after about a year of testing for everything else, and I have managed to continue working full time, with the exception of a reduced schedule last year to attend a wonder Functional Restoration Program two days per week.
The program was great, and really helped. Then I went back to work full time. I am back in that work and rest existence, not seeing family and friends, eating things that I know I shouldn’t because it’s fast and easy, I haven’t been to the gym or a yoga class in months.
Monday I have an appointment with my PCP to discuss a leave of absence to see if I can get myself into a good place where I can return to the work I love without giving up every other aspect of my life. I am so nervous that he won’t agree with me or that he will cop an attitude or more unknowns I am making myself nuts thinking about. You just gave me hope and a little peace. Thank you from the bottom of my heart.

I LOVE that this just happened!!! LOVE it-that you just responded to another person’s comment, Rachel. Thank you so much. I am hoping Allysgrandma will see it.
I’m sorry about the stress of work. I went through that myself and it was a really painful process. Unfortunately, I was never able to return, but Allysgrandma just proved that that isn’t the case for everyone. For me, stopping work gave me a chance to have a life again. It was, for a time, really painful to lose all I built and horrendously hard, financially, but in the end, it was what needed to happen. I hope your PCP can help you and enable you to find a happy medium. My PCP has helped tremendously, in that regard. Either way, put yourself and your happiness first. That’s what keeps us healthiest. ❤️

I love the part about the opiates. Every specialist I’ve seen tells me opiates don’t work for this type of pain. I take 600mg Ibuprofin and 10-20mg Oxycodone to be able to function, at least once a day. Obviously they haven’t done thier research. Most pain patients I know agree that opiates are the best answer for pain control.

You know, I cannot for the life of me figure out where they get their statistics. I wholeheartedly agree; Oxycodone saves me and works effectively for many (if not all) other sufferers that I know. That study I cited also denotes the same. I sometimes wonder if they skew results because of the “opiod epidemic”. Either way, it’s super frustrating and not correct information. Thanks so much for reading and commenting! ❤ Stace

I like most of this list, except you left out that they are discovering a lot of patients do have autoimmune deficiency once getting fibromyalgia. They are currently working on this with testing and blood samples, after they did a broad fibromyalgia survey.